The agony and the mystery of sufferers' lament

Caroline Lavender

It was in the late '70s that Charles Shepherd became ill with myalgic encephalomyelitis, or ME. It was an era when the condition was dismissed as ''hysterical nonsense'' by most clinicians. While working as a young doctor at Cirencester Hospital north-west of London, he had contracted chickenpox from a patient. ''I'd been perfectly fit and healthy. The infection had resolved but I felt mentally and physically knackered,'' he says.

Shepherd says he has never been truly well since. He ''plods along'', though managing to enjoy life: he regularly walks his dog near the Cotswolds home he shares with his wife Pam.

As medical adviser to the ME Association, Shepherd has spent the past two decades vigorously fighting the ''all in the mind'' attitude that, he says, is still common among the medical profession. He is convinced that this complex disorder, which has puzzled scientists for decades, has biological rather than psychological origins, although, unlike some on the militant fringes of the ME community, he prefers to use reasoned persuasion rather than threats when discussing the cause.

''I unequivocally condemn people who send abusive emails,'' he says, referring to the harassment of researchers, doctors and journalists who have speculated on the ''psychological'' explanation. ''But I also understand why people feel so angry. Many doctors still don't believe in the existence of ME. They refuse to diagnose or manage it. That is totally unacceptable.''

Now more commonly known as chronic fatigue syndrome, ME has come a long way since it was derided in the '80s as ''yuppie flu''. Today, it is recognised by the World Health Organisation, the National Institute for Health and Clinical Excellence in Britain and much of the medical establishment as an often severely disabling disease, characterised by a wide set of symptoms, the chief ones being profound fatigue and widespread muscle pain. Difficulties with concentration and memory are also common.

Yet the debate over the cause of ME continues. Is it biological, psychological or both? The controversy flared again in September, with the publication of findings disproving the theory that ME is linked to XMRV and mMVL, viruses that had previously been isolated in tissue samples taken from ME patients.

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The collapse of this theory, greeted with dismay by some ME patients, came as no surprise to Shepherd, who says he was always sceptical of the ''hype'' surrounding it. ''In the US people spent a lot of money getting tested [for XMRV] and getting anti-retroviral drugs, but we have always advised against this because the research hadn't been properly evaluated or replicated.''

ME researchers now view the illness as having three separate components: a (probable) genetic predisposition, a precipitating factor (which, for 75 per cent of patients is an infection, usually viral, although occasionally other immune stressors such as immunisation may be a trigger) and finally the development of the condition itself. Other signs include fainting, low blood pressure, and irritable bowel syndrome.

The origin of such symptoms remains a mystery. One theory is that ME patients have an aberrant immune response that fails to ''switch off'' after the original infection has resolved itself. It is possible some ME patients have a surfeit of cytokines, which are chemicals produced by the immune system.

Another theory is that an auto-immune response may be involved. Other research is looking at muscle abnormalities in ME patients, with evidence that some sufferers produce excess acid when they exercise.

One study is examining potential structural abnormalities in the mitochondria - cell components that produce energy in a usable form - in skeletal muscle.

Then there are abnormalities in the hypothalamus. This tiny, gland in the brain regulates several functions including hormone secretion via the pituitary and adrenal glands. Problems here could help explain symptoms as diverse as sleep disorder, low blood pressure, temperature disturbance and heart, bowel and bladder problems. ''A large number of papers demonstrate that ME patients have abnormalities in the hypothalamic-pituitary-adrenal axis,'' Shepherd says.

In particular, he says, ME patients have been found to have lower levels of cortisol, a hormone secreted by the adrenal glands. He concedes that ME researchers are still ''fitting together the jigsaw puzzle'', with some way to go before treatments are developed.

Shepherd is critical of the national institute's advice for sufferers to partake in graded exercise and cognitive behavioural therapy to ease symptoms. ''The Nice guidelines reflect the belief that this is a psycho-social illness,'' he says. He advocates listening to your body to find the right balance between rest and activity. ''I go swimming and walking, but within the limits of what I can do.''

He is encouraged by progress at the UK Medical Research Council, where an expert group to encourage high-quality research into ME was set up in 2008. Funding has been approved for five studies, among them mitochondrial function and cytokine production in muscle tissue, immune system involvement and autonomic dysfunction.

So is Shepherd discounting any psychological component in ME? ''I have no problem with the idea that the mind affects the body and the body affects the mind. Of course, people who are chronically ill get depressed and have psycho-social stress. But the point is that too much energy and money has gone into research based on the belief that ME is psycho-social when the right route is biomedical.''